CDC Wants Feedback on Its Fragile X Online Registry Form
Published Date: 11/2/2026
Notice
Summary
The CDC is asking for public feedback on a new form for the Fragile X Online Registry to make sure it’s useful and not too much work for people to fill out. If you have thoughts on how to improve it or reduce hassle, now’s your chance to speak up within 30 days. This helps keep data collection smart and efficient without costing extra time or money.
Analyzed Economic Effects
1 provisions identified: 0 benefits, 1 costs, 0 mixed.
Caregivers asked to complete 1-hour Fragile X survey
If you are a parent or caregiver of a person with Fragile X Syndrome (age 40 years old or younger) who attends one of the three U.S. clinics participating in this project, you may be asked to complete an online caregiver survey that takes about 1 hour. Each participating clinic will recruit a minimum of 200 eligible persons (at least 600 total across the three sites); CDC estimates 200 annual burden hours and says there are no costs to respondents other than their time.
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